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I spent the whole week anticipating when January 4, 2018 would arrive.

I was awake past midnight drinking in the fact it was finally here. I eventually went to bed confident I would wake up again in a few hours. I did wonder if I would feel differently.

It has been 4 years since the wreck happened as of Thursday January 4th, 2018. It has been hard to separate my life from that one catastrophic event and the events that took place around that time. It’s like my body’s cells hold the memories my mind cannot seem to bring to fruition in their entirety….even now.

All day my body ached, spasmed, and refused to cooperate with me. All day, with each deep breath and slow measured movement I was reminded that even though it was four years ago and a different time entirely – the pain goes on.

All day with each deep breath I was grateful. To be able just to breathe and be aware of what was around me seems like such a precious gift. To be able to hear the kids waking me up and to hug them and touch their beautiful faces was such a simple pleasure I lost for a while back then. To walk (albeit slow, painfully, and guarded) around and touch a door, a counter, the wall, a picture, and descend the 13 stairs that always feel like an accomplishment to tackle…going up or down – was a gift I remain grateful for still.

I have a life. No, it’s not my old life. It’s not a life without daily physical pain. It’s not a life without struggles on many unseen levels. Hell, it’s not even the life I wanted, dreamed of, or imagined for myself at this age. It is starkly different. However, it is still valuable. In many ways, even with all the seeming uncertainty my life still matters and I love my life even more.

The value of having love from a person who truly believes you and believes IN YOU cannot be overstated. That love pulled me through dark pain, dark thoughts, and from the other side where HOPE dies, Faith falters, and the darkness of depression laps up the drips of ongoing pain and overwhelming fatigue. Love, patience, acceptance, tolerance, validation, and empathy. I am blessed with these every day from my husband, my mom, my kids, my brother, and most of my providers.

I am stuck. Stuck between true determination, progress, and fortitude and a stagnant knowing acceptance of this pain going on for eternity. Stuck from moving forward as each step forward drags me backwards towards the abyss a little more each time. Stuck being a hypocrite of sorts because I work to find value in the pain and limitations of these disabilities. Even though I find myself begging for relief from my Creator as some days it is too much to bear. Stuck with wanting to work and bring awareness to Polytrauma and Traumatic Brain Injury ….all while having the consistent lack of cooperation from my body, mind, and utter lack of motivation.

I feel relieved for meeting people, groups, and providers who truly value life as I now know it and help me stay on track.

I feel like I should be saying something wise, positive, and upifting today to all of you reading this. Yet I have nothing else but that which I already continue to give. My transparent self.

So much swimming in my head today. So much healing validation. So much continued angst and so much continued life force to pay forward.

Let us remember the 4th Anniversary of my survival, my youngest son’s survival (and that of Greta the other driver). Let us remember that this was the day Caren died four years ago and was brought back; to show that HOPE lives and all things are possible as long as we dont get tunnel vision. With a little Faith and a whole lot of self-determination I embrace the desire to SURVIVE!!!

To all you other warriors out there standing up to your own dark sides and embracing the changes that continue to engulf you…or to those who are helping them face their daily battles….thank you. May you know peace, may you know relief, may my strength be the light saber that helps you find your own independent path as well.

At the end of the day, do your best. Make every effort count and never ever give up HOPE. May the 4th be with you!!!

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I just wanted to thank those of you who have signed up on our email notification list here on our website http://www.hopetbi.com

I also want to thank you if you “liked” our page on Facebook and follow the Blog posts. It means a lot to me and hopefully what I write is helpful to you or someone you know in some small way. If you haven’t liked our page on Facebook yet….now’s your chance.

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Events are typically considered traumatic when they threaten the life or bodily integrity of the individual who experiences them. After experiencing a trauma people tend to develop certain predictable reactions. Examples are the following:

Persistent and unwanted thoughts, memories, or dreams of the event

[while I have no memory of the wreck I was in, since I started dreaming again, I dream of being in wrecks, of my kids or family members dying in wrecks, and am consumed with many unwanted thoughts and various levels of anxiety when in a vehicle that varies from day to day. On my worst days this creates a lot of fear and anxiety]

[I can attest to all of this. This is one of the largest part of my recovery that I continue to work on and that gives me the most challenging hurdles to overcome and deal with]

Avoidance of places or things or events that are reminiscent of the traumatic event

[ I can’t say that all of this necessarily applies to me. I do like to avoid driving in bad weather, as it makes me quite nervous and fearful. Stop and go traffic heightens my traffic anxiousness, and I have a lot of other challenges while riding as a passenger now…especially]

So, that being said, the wreck I was in was absolutely a traumatic experience.

I always felt I had a high pain tolerance before the wreck. I may have, I did give birth twice after all. Yet now I believe I was mistaken. Childbirth Labor does not compare to multiple fractures and the chronic pain that never goes away from multi-system traumas. At least with childbirth, eventually the pain stops and repeating that process is a choice.

My tolerance for pain has grown ten-fold. What I would have gone to the hospital for before, I wouldn’t even blink at for a Tylenol now. That being said, I have sunk into a new acceptance of this chronic pain filled body I live in now. I accept it as my new normal. My new cloak of pain I have become accustomed to. Chronic pain that some days holds me hostage from accomplishing what I desire. That is, until it raises its ugly head to show me it can still get worse with white hot nerve pain, muscle spasms, and a debilitating wave of continual sharp anchors that drag me down.

I have always had an intuitive relationship with my body. A polytrauma screws all that intuitiveness up. Some days it’s hard to know what is up or down or sideways with where that chronic pain is located. Some days I can point right to its origin. Other times it feels like it is all over me and I can barely walk or pick up my feet.

I have been hurting a lot since I got off of the pain pills on my own. My back aches, my feet intermittently get pins and needles. My right knee doesn’t want to cooperate with that left foot that tends to drag by the end of the day. My neck feels puffy, tight, and just hurts and acts like it has a little storm in there shooting electric lightening bolts down my arm to my fingers and up to my ear now and again. My ribs that are plated, like to play musical ribs for the spasms and often include the right lung and back in their spasm just for fun. My head throbs and I feel such intense exhaustion. Most days, it is a struggle to just get moving. Add that on top of the random high pitched dog whistle sound in my ear/head at inconsistent times. Makes things quite interesting.

I am driving more now too…so that means no muscle relaxers or pain medication while on the road or doing errands. I am strictly diligent about this. Of course, the trade-off to taking on more responsibility is being more irritable, hurting more, having more intense muscle spasms, shooting nerve pain, and dragging myself around literally days and weeks at a time without being able to get on top of the pain and discomfort.

I am a whining mess as I type this as I so get tired of hurting and aching. Here is the irony though. I love being alive so much, and value life so much, that the value of living is worth more than the miserable pain that continues to come in waves.

I got news for ya’ ….Chronic pain threatens body integrity as well. Any new flares that are not the new normal are seriously emotionally and physically exacerbating. It’s like “seriously how much must I take”. So the trauma continues and I remain….Hurtin’ for certain.

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Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space. Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.

As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances. I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.

Getting out of the house is a solid accomplishment. There is a lot of planning that goes into getting out and about. There are things to consider that I took for granted before the Polytrauma. Checklists are my friend. If I deviate from this process we have established, things do not go well at all.

Some days I do better than others. I find I am able to be out longer and more often than even a year ago. However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible. Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.

Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards. A one day trip could take several days to recover from. A day of appointments could take a week to level out from again. If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.

So planning in advance, if possible, become a requirement. Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.

Having things to help you cope in moments you can’t be home is imperative.

Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general. I wanted desperately for things at home to be normal. Since the polytrauma I would feel emotionally and mentally….well…..flooded. Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away. In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me. It is like there are too many sounds to sort out or too many thoughts to try and think at once. I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out. So we came to an agreement that if I said “Brain Time” all things ceased no matter where we were.

In the beginning I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head. No interruptions, no calls, no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days. I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still. I slept a TON.

As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.

However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process. I am learning to pace myself still and manage this more effectively. This does not make for a great social life though, I will say that.

Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere. I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.

After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival. When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable. No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward. The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.

Two and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken. I was horrified to find myself LOST after taking my kids to school. In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before. I used a GPS because it was like I had never been there before. Now THAT made me feel coo-koo….I didn’t understand. Then I got lost heading home. I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed. GPS became an absolute crutch. As time has gone on, I have gotten better about figuring out my routes. Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.

It is a horrific and scary feeling to feel LOST. I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS). Most times he would answer the phone, sometimes he didn’t hear it and I would be out there in a full blown panic. I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me. I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it. I do not remember how I made it home in those elevated panic times. What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room. It has been a massive process to get back to driving again.

Now I am driving more often and the short local routes I do really well at. If I forget I just turn on the GPS. We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way). So the phone is as important as the mortgage for me as far as financial priorities.

Buildings I have been to a lot I still get turned around in since my Trauma. Oddly enough sometimes I get lost in my own neighborhood or kids’ schools. If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!

Peat and Repeat Languaging – the way I communicated became annoying and complicated. I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible. When people would talk to me I had to have them look at me to hear them. I found myself reading lips to understand what I was hearing, or thought I was hearing. If they turned their backs to me I would ask them to turn around and repeat what they said. Some folks are super accommodating, some act put out by this. Often times folks think you aren’t interested in listening or you do not care about what they said. It wasn’t that, I just couldn’t process what they were saying. Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes. Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words. This was maddening. Oh! if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.

This has gotten better for me in a lot of ways through my rehabilitation journey, not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance. I am a lot better about being vocal about it though with who I am speaking to now. Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.

Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since. I love words, their meanings, and expressing myself in a creative fashion. I won spelling bees in my younger years and have always been a semanticist and quite loquacious.

However after the trauma, that seemed to also have changed. I couldn’t remember how to spell basic words. I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch. I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”. I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.

Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together. I could always tell when I was hungry, when I was full, and when I was snacky.

After the polytrauma I seemed to lose the ability to feel hunger or fullness. For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general. No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before. My sense of taste and smell had changed. Some of the things I enjoyed before now repulsed me. Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation. In fact, if I wasn’t brought my meals in those early months and sometimes still…I just wouldn’t eat because I would just forget to eat or have no interest in it.

As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though. More often than not, I forget to eat or have no interest in eating.

I do like some textures or flavors of some things that I never liked before. My family and I equally find this as quite bizarre.

What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE. More specifically FREEZING MY TUCHUS OFF!!! I was always cold. I couldn’t get warm, not even in the Summer months. People would be sweating and I would be freezing and covered up with my electric blanket and shaking from being so cold. I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!

I have come to realize that my thyroid-pituitary-hypothalmus axis was way off. My hormones were all over the place and apparently I rattled that temperature control center of my brain pretty good.

I still have some great hurdles to overcome when controlling my comfort regarding temperature. At least now I can feel warmth eventually and not be as cold. Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down. More often than not though, I still get cold. Brrrrr’kin is what the kids call it.

So what temperature is it anyway? I am probably not the most reliable person to ask. You might want to check outside…..then let me know.

There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.

However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning. If you are experiencing these things, you are not alone. What you are experiencing is real.

Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.

Thanks to Auto No Fault I was able to have the necessary MULTIPLE xrays, CT Scans and lifesaving surgeries to help me survive. I had to go out of State to save the use of my arm due to a shattered scapula as we have no Trauma surgeons in Michigan who were trained to do that repair. Michigan No Fault made it possible for me not to lose all of the function in my right arm. My whole scapula and shoulder had to be rebuilt.

Medicaid and Medicare would NOT have covered this. We would have been stuck in months of pre-authorizations and appeals and I would have died.

I would have left behind my husband (who is also my provider so I could remain at home and not in a nursing home) 6 children, a mother, a brother, a
nephew, and other family. I would have lost the ability to advocate for others and to function at the level I currently function at.

My story would have ended tragically. My story, while yes, tragic and traumatic continues to be HOPEFUL due to Michigan Auto No Fault.

I WILL need surgeries in the future. It isnt IF….its WHEN. Auto No Fault provides me with the medical security to still be here for my children, and hopefully some day….their children.

Please, I implore all voting members to vote

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

You are literally investing in Michigan’s future and survival by voting to save lives and protect the communities you are pledged and voted in by your constituents to serve.

What do you want your legacy to be as a politician, as a fellow human being leaving their mark on this world???

Someone who saved lives and cuts costs by holding insurance companies accountable, or someone who sentenced thousands of men, women, and children to death and financial ruin?

You can be the implement of positive change. You can be a hero. You can be a HOPE’ster.